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To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education: A Patient's Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
Abdominal and breathing exercises for FSHD
Disclaimer: Not every exercise is appropriate or safe for every individual, so please use your best judgement and consult your health care provider. We’re excited to launch Feeling Fit with FSHD, our new Gathering Place Zoom group. So many of the questions we get from the FSHD community are about exercise and physical therapy, and…
International research round-up
Report from the FSHD Society’s 29th annual International Research Congress by Alexandra Belayew, PhD, Mons, Belgium This year’s congress (June 16-17) opened with a keynote presentation by Lexi Pappas, who gave a very moving testimony of what it can be…
Upcoming Events
CarePartner Hour – Talking to family and friends
Zoom Virtual Meeting8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month is "Talking about FSHD with family and friends." Sharing a diagnosis when first given, planning for family, and planning ahead for care as we age. This monthly meeting is for those of you who are providing care...
Women on Wellness – Pelvic floor issues
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will have a physical therapist who specializes in pelvic floor relaxation concerns, such as incontinence, come and speak with us. Katie Dougherty, PT,DPT has graciously offered to donate her time and expertise...
Wellness Hour – Coping strategies
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, join us for a discussion on coping with the changes brought about by FSHD in various aspects of your life. What have been or still are your greatest challenges? Share the life hacks you use to deal with...
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.